Captions by Jessica Boell. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014 UPLIFTING MUSIC CONTINUES ENCHANTING MUSIC Hi, my name's Lily, and I want to be a ballerina. I don't think there's a lot that could stand in her way to stop her. A bit too mouthy. (LAUGHS) A bit too mouthy. (LAUGHS) Very determined. ENCHANTING MUSIC CONTINUES DIRECTOR: Cos who are you? > Superstar Princess Lily. What's it like having all this film crew in here? > What's it like having all this film crew in here? > Strange. (SQUEALS) (GIGGLES) Um, this is the way to my bedroom, and this is how I open the door. Um... Lily is full-on, and she's very passionate about things. This is my bathroom. And what I like about my bathroom is my pink curtain. Lily's got a thing about pink. She likes bling bling. She likes bling bling. She likes bling bling. Anything pink and sparkly, yes, definitely, yeah. And this is my room. So for Lily, her arthrogryposis ` she has it in all four limbs, so her hands face the wrong way, her arms` elbows are stiff and her shoulders are rotated forward. I can get up to my bed by coming through here. You guys have to try and squeeze through, if you want to. Her hips don't work, so when she walks, she has to walk through her hips rather than swing her legs, and she can't bring her legs together on her own. Um... and here are some steps. She much prefers to being on her bottom on the floor. She knuckles her hands and moves herself around cos it's quicker. She's 24.5 kilos now, so the damage she can do to her shoulders is getting to be more and more noticeable. And this step is a bit... wobbly. Lily doesn't like using prosthetics. They feel uncomfortable. They're really really slow. For me, I find it frustrating that she doesn't want to use her legs. And I'm sorta thinking, 'But you'd be so much better if you could use your legs.' And she says, 'I don't want to use my legs. I just wanna stay on my bottom and shuffle.' < DIRECTOR: And what's your favourite way of getting around? < DIRECTOR: And what's your favourite way of getting around? Crawling and moving on my bottom. They're both the best. < Why are they the best, do you think? Because they're a bit easier than walking. Rosie normally falls asleep when I put her` when I lie her down. So I'll just sit her up so she stays awake. Guys, just tell me if she wakes up. TRANQUIL MUSIC (GURGLES) LULLABY PLAYS Lily came into our lives when she was eight months old. GENTLE KNOCK AT DOOR Her mum and dad couldn't look after her, so we took on full day-to-day care and guardianship of Lily. And, um, that was a change in plans. (GURGLES) I mean, my youngest is 23, so I'd kinda` we'd kind of had a different... life for us planned once my last one left home. So this is all new again, back to being, you know, single income supporting a child, doing all the Mummy things and nappies and night bottles and stuff. TRANQUIL MUSIC When Lily was first born, she was born with` she looked wrong. Her arms and legs were all in different angles where they shouldn't have been. I went to visit and I noticed there was something wrong. I did say something, and the midwife just said she was going to be fine, she was just in the birth canal too long; she'd come right. It wasn't until she was three months old that she was taken to a doctor and diagnosed from there with the arthrogryposis. (CHATTERS) We had actually no expectations at all. We were just winging it, pretty much, because we didn't know what arthrogryposis was. It was a really long learning curve. We did some internet research on it. Um, met up with a group who... with arthrogryposis. And they were absolutely amazing, brilliantly took us through everything we needed to know and were there all the way. (LAUGHS, GABBLES) We knew that it was an umbrella term to cover a range of things, so in each case that we had seen, their condition was different. So I haven't seen anyone with` like Lily, who has it in both arms and legs and who was stopped by doing most things because of that. Here we go. Gonna count with me? And we're gonna go one, two, three,... (CRIES) (CRIES) ...four, five, six... What we're doing is every time we changed her nappy or she was lying down, we would try and stretch out her limbs to try and stop some of the tightening that was going on. (CRIES) 10, good girl. 10, good girl. CRIES: No! What was happening was the tightening was ongoing, so at some point she would end up having to have surgery because the limbs were going to tighten to the point where her legs, her heels, would be on her bottom, and she wouldn't be able to sit. (CRIES) (CRIES) ...nine, 10. What's Daddy got? Ready for your bot-bot? Bubba, look. At that point, it was already too late. The legs and the arms were too set. And it was only down to physio, and the amount of physio they said that she would need would be eight hours a day. Nice cuddles. Lovely cuddles. SUBDUED MUSIC So we had the first surgery on October the 2nd, just before she turned 5. So hours in surgery and they cut through the top of the foot and pulled the foot around, straightened it up. And six weeks after that, the blood vessels had been so badly damaged during the surgery that the foot died. First amputation, that had to probably be the hardest cos we weren't thinking of amputation at that point. We were just thinking antibiotics fixing it and it would be OK. So that was what was really really hard. SUBDUED MUSIC CONTINUES Having to... watch her come out of the surgery and see that she's lost her leg ` that was really hard. She just says, 'Mummy, why did you let them cut my foot off and throw it in the rubbish bin?' And you can't tell her that... SUBDUED MUSIC CONTINUES We'd always been honest with Lily, and we'd told her every time she went into surgery what would happen` What the outcome would be. What the outcome would be. Yeah. So she knew that... if she had the legs removed, she would be able to get new legs and still walk. That was her goal. It's all she wanted to do. She wants to dance. WHIMSICAL MUSIC Feel like showing me your new legs? Shall we get out of here and try them on and see? Are we off? When she first got them, they had these big duck feet on the bottom of them again. 'No, they're not my feet. They're not my feet.' And she was disappointed cos they didn't look like legs. She didn't want to use them, didn't like them at all. They were bulky, they were horrible, they hurt. QUIETLY: Ow, ow, ow. QUIETLY: Ow, ow, ow. Do you need some help? Oh, well done. Oh, well done. Can you get up on your legs? (GRUNTS) Nope. Is it hard, is it? Is it hard, is it? A bit hard in getting up. You try. Up again. Keep going. You try. Up again. Keep going. This belt needs... Having to learn to walk with legs that aren't yours, that's really hard work. Can you stand up nice and tall for me? Well done, Lily. That's lovely. And she has lumbar lordosis, so her back curves in, and you'll see when she stands, she stands arched. It's about teaching her to use her core tummy muscles and bringing in her tushy to stand straight. And once she can start doing that, she'll start to get her own centre of gravity a bit better. Good girl. Good girl. I need my walker. (GROANS) Hmm. Tummy in, tummy in. Here we go. You're doing that beautifully today. I'm running! (PANTS) < DAD: I'll beat ya. MC, try and beat me. Squeeze that bottom, tuck that tum. I beated you! I beated you! < You won! < Can you turn around? (EXCLAIMS) (EXCLAIMS) Come on. Lily, you've got to do this. I'll put my hands on you so it won't happen in a hurry. I want you to sit down on one side for me. Go sideways. Go sideways. No, that's hurting it. (GROANS) There you go. There you go. Thank you. Daddy can hold the bag. Read the words in this story. I know you've all been tested for your reading, so I know how well you're reading anyway. READS: The lion looked up. This is her second year of school. She's spent a lot more time at school this year than last year. Good girl, Lily. I like the way you went to` Did you use sounds to work out the word 'let'? Well done. I'm really proud of her, considering how much she's been in hospital and how much pain she's been in. She's managed to keep up with all the other kids in class. KIDS CHATTER I catched a snapper, and it pulled me into the water. I catched a snapper, and it pulled me into the water. LOUD LAUGHTER My dad went like this... LOUD LAUGHTER Once I was on a boat and the boat cracked in half and it tipped upside down, and I was sticking to it because I was glued on to it. and I was sticking to it because I was glued on to it. LOUD LAUGHTER BELL RINGS, OVERLAPPING KIDS' CHATTER Guys, please move! Please, move. Please move. One of the biggest challenges Lily has at school ` during lunchtime and playtime she's in her wheelchair. There's nothing else for her to do. KIDS CHATTER When all the other kids are doing Jump Jam and running round the playground, she can't do that. Running in and out of the sandpit, they're running round chasing each other. But when she joins in, they run fast and she can't keep up. So she kinda just gets bored and wanders around. KIDS CHATTER This is where I need her to walk, so that she can be out there and be mobile and be with all her friends, and even if she can't climb the jungle gyms, she can still be at the bottom cheering them on. At this point, she can't even get near the jungle gyms. Lily's using her legs at the moment every day at school. She's got an awesome teacher aide called Caroline who puts her through her paces. CLASSROOM HUBBUB She walks from the toilet block to the library on her own with her walker and her legs, which takes 33 minutes. It's a 10-second walk for the average person. Thank you, Luke. In an average day, for Lily, 10, 20 minutes on her legs is tiring. They reckon 10 minutes using prosthetics is the same as a normal person doing a quarter-mile run. (PANTS) (PANTS) Halfway there. Right, breathing. Right, breathing. Are you sweating? Do you want a drink? No. No. Hey? No. Hey? I want my legs off. OK, well, as soon as we get through to the classroom, we can take your legs off. Five, six... Oh my gosh, you're going too fast. I can't count any more. Yeah. Can we take my legs off right here? Yeah. Can we take my legs off right here? Yes. Then you have to go down. No, I can't get down on my own. It hurts my hips so much. Well, when I first stand up on my legs, I cried a little bit cos it hurted. Hello, sweetie. Ooh, what's that? TRANQUIL MUSIC (CRIES) (CONTINUES CRYING) Come on. I know you're tired. Come on. I know you're tired. But I thought we had to go that way to get the`! We're gonna go this way for now. We're gonna go this way for now. Why?! Why? Cos I asked you nicely. Cos I asked you nicely. CRIES: But why? As the week goes by and we get down to Thursday and Friday, we notice the anger is starting, um... A lot of anger coming in. She's really aggressive. Um, she yells and screams. (GROANS) At the end of last year, Lily was so aggressive every single day. And it was lasting two or three hours. And she was just yelling and screaming and trying to hit and carry on. No, I'm not touching you! OK. What do you want to do then? Do my own thing and do what I want! And I won't even bother about listening to you again! (SOBS) It just comes down to the` I guess the grieving process. She'd had dozens and dozens of surgeries and so much invasive stuff done to her that it was almost overloading her system. And it was control. She needed some piece of control in her life. I want everybody at all` I want everybody at all` < We don't listen to you. And I'm letting no one in here! So both of you out. TWINKLY MUSIC (SHUDDERS) I don't wanna sit on your knee! (CRIES) (CONTINUES CRYING) Everything she does is physically draining for her. But 99% of the time, she's really really positive about everything she does. Everything she does is done to the best of her ability. Daddy, can you please put me up at the table? I can. Are you ready for dinner? I can. Are you ready for dinner? Yep. She needs to be independent. And there's nothing wrong with her brain, so there's no reason why she can't figure things out and do things herself and find a way to do things. No, thank you, cos I don't like salad. We got tired of feeding her, cos her arms used to be straight, her hands faced backwards. And we just said to her one day, 'You've gotta do this yourself.' Salad taste is like... rotten tomatoes. Put hairs on your chest. I'm not a man. I'm not a man. You're not? So Pete built a tray that holds her plate, cos she needs to rest on the side, and if she rests on her plate, her plate would flip over. He built a tray, put the plate in there, and she can rest on that. She can feed herself. And she taught herself to feed herself... out of necessity. Hey, Lily. Look at this cool book I found to read you. Hey, Lily. Look at this cool book I found to read you. Cool! Did you buy it? Did you buy it? I did. It says 'All Tutus Should be...' ...Pink! ...Pink! Pink! My favourite colour. My favourite colour. I know. READS: 'I love my new tutu. 'It's... 'It's... ...pink! I'll say all the pink, OK? 'Emily has a... 'Emily has a... ...pink... 'Emily has a... ...pink... '...tutu, too. 'Our favourite person is our dance teacher, Mrs Yvonne. < 'She used to be a famous... ...pink... ...pink... < '...tutu dancer. 'We want to grow up to be famous... ...pink... ...pink... '...tutu dancers too. 'But I think we would wear our tutus even if we were truck drivers.' TWINKLY MUSIC SUBDUED MUSIC Just recently she had a really bad dream. And everything in her room was running away from her and she couldn't catch up and she was really scared cos everything was moving away from her. SUBDUED MUSIC CONTINUES She says to me, 'Mummy, but I have a dreamcatcher. Why didn't it catch my dreams?' I said, 'Because a dreamcatcher only catches bad dreams. Maybe your dream was trying to tell you something. 'Maybe you need to start walking now so you can catch up to these things.' Now she wants to start walking because her dream has told her this is what she should be doing now. We go horse-riding, Mum! Are you all ready? Are you all ready? Yeah! Are you all ready? Yeah! Cool. (SINGS HAPPILY) # Going horse-riding. # Today I'm horse-riding at the horse park. And I` And if my, um` And if someone picks me a dirty horse, I can magic it to a pretty horse with my magic wand. (SINGS HAPPILY) It would be really cool if I fell off when I was still holding on to the reins. (LAUGHS) BANJO MUSIC Ooh, magic wand. Ooh, magic wand. Magic wand. Come on. You have some work to do, magic wand. Hi, Lily. Welcome to RDA. How are you? How are you? Good. You excited? You excited? Yes. It's gonna be fun. You're going to be riding Atlas. Yeah. Yeah. He's a very cute pony. (GASPS) Mum, she didn't say action. Oh my goodness, you're fast, Lily. OK, I know the one you really want. That's pretty good, isn't it? Now she's learning to walk, her balance is improving and her perception. Mum, can you put this on my chair? Mum, can you put this on my chair? Riding can help with the balance and perception. One, two, three. Just relax. There we go. We're looking at building core strength, making it really fun activity which builds confidence. To give her the feeling of freedom, being on a horse, cos that's really important. And looking down on everyone, instead of always looking up. That's why she yells. That's why she yells. That's why she yells. That's why she yells. Mm. LAIDBACK COUNTRY MUSIC Magic. Can we do jumps? Can we do jumps? We can go round` Stretch out the front and get it again? Stretch out the front and get it again? Stretch as far as you can. Good job. Walk on. Walk on. That's very good. Very clear. You nearly stepped in the poos. You nearly stepped in the poos. LAUGHTER LAIDBACK COUNTRY MUSIC CONTINUES That shed looks very dirty for Flame. Taller than you, you and you. MUSIC FINISHES 'We're going to go and meet Robbie and Jackie, and Robbie's missing one leg as well. 'So it's going to be really good for Lily to meet her and a female that she can talk to about that.' I've got a big surprise for you. I've got a big surprise for you. (CHUCKLES) Hello! Oh, you must be Lily. Hello! Oh, you must be Lily. BOTH: Hi. Welcome, welcome. I'm Robbie. Come in. This is my mum, Jackie. This is my mum, Jackie. Hello, welcome. Delighted to have you at our house. And this is your mum? And this is your mum? Yeah. Bye. Bye. You all right? Bye. You all right? I'll see you later. Do you know what these are? Do you know what these are? Um, that's what I'm gonna get when I get my legs. Exactly. And do you know who these belong to? You. You. Me! Do you know this leg here, this is the leg` my last leg I had before I had a huge operation. Kind of like the operation that you've had. So when I was little, I was born with a leg down to here. But it wasn't a very good leg. And so when I was 12, they cut it off through the knee. This is my first ever leg. That you had when you were a baby? That you had when you were a baby? Yeah. Do you wanna touch it? That you had when you were a baby? Yeah. Do you wanna touch it? Yeah. You can hold on to it if you want. And do you know what my leg is called? And do you know what my leg is called? No. It's called Lucy. It's called Lucy. Lucy? It's called Lucy. Lucy? Lucy. And this is Lucy, and this is Lucy, and they're all called Lucy. And this is Lucy, and this is Lucy, and they're all called Lucy. Is there`? Is that their name? Yeah, that's their name because` Yeah, that's their name because` Did you name them? Yes. Well, it was really difficult for me to say 'prosthesis' ` that's the proper word for it ` or 'artificial leg', when I was little, so we called it Lucy Leg. This one has pink painted toes. Can you see? Can you see? Did you paint them? Can you see? Did you paint them? Yeah. Yeah, you do that veil; I'll do this veil. Yeah, you do that veil; I'll do this veil. Yeah. She's just recently had a huge big blowout ` just everything came out. 'I don't want to be me. I don't want to be somebody in a wheelchair. I don't want people to stare at me. 'I want to be a dancer. I want to swim. And I want to play on the jungle gyms 'with the kids at school. And I don't want to spend all day sitting in my wheels. I want`' Yeah, it was just so much... Just suddenly realised who she was, you know. It was about this age, and it was the realisation that, 'How I am is not how everybody else is.' And I heard her say, 'Mum, is my little leg going to grow like the other one?' And I'd say, 'Oh, yes, Rob, it'll grow, but it might not grow as much as the one on the right.' And so she'd digest that and ponder that, > and then about six weeks' later we'd go through it all over again. > Then we went through another season where, I think, Robbie decided herself, well, what the heck. And her prosthetic was fluorescent pink when she was a chapel prefect at her school, with a crucifix, cos she` tattooed, sort of, with pen down the side of it. So she thought, 'What the heck? If I'm going to, why not? Here I am, world. I'm coming.' Does it feel real to you? Does it feel real to you? Mm, kind of. I wanna ask you about your duck feet. Can you tell me about your duck feet? Well, if I bring them in, I could've showed them. Well, if I bring them in, I could've showed them. And do you want to use them more? No. What about at school? Or at high school? How will you get around then? How will you get around then? Do this all the time. Are you going to go round on your bottom all the time? Are you going to go round on your bottom all the time? Mm-hm. Is that easier? Oh, I can't when I go to high school, cos there's a lot of stairs that I'll have to get up. So what could you use a leg like this for? Um... Walking. Walking. Walking? Would you be tall? Or short? Or short? Tall. Tall? How tall? Tall? How tall? Um... The same as you. The same as you. Same as me? And what about dance? Do you like dancing? What's your favourite type of dance? What's your favourite type of dance? (SIGHS) Ballerina. Ballerina! Me too. Ballet is my life! Ballet is my life! Is it? Do you know what we're going to do this afternoon? We're going to go meet some real ballerinas. (GASPS) Yay! Yay! Yay! What do you think about that? What do you think about that? You're the best! Yay! TINKLY MUSIC They're going to be so jealous once they see my dress, eh? Yeah, they'll be really jealous of your dress. Hello. Is it Lily? Hi, Lily. I'm Lucy. Have you ever seen any ballet before on TV or anything like that? Have you ever seen any ballet before on TV or anything like that? I only have a DVD. Oh, really? I said, 'Mum, you have to put me in ballet at my school.' I said, 'Mum, you have to put me in ballet at my school.' Yeah? Oh, yeah, Mum will do that. She has to. She has to. She has to. SLOW PIANO MUSIC PLAYS We thought it'd be really cool to take Lily to a ballet class and watch the dancers do their practice. We were hoping that it would inspire her and push her along and see the need for her to be walking on her duck feet and then further along up to bigger legs. < I can do a spin. You can do a spin, can you? > But it` With one leg. Wow. (GASPS) Wow. That's amazing. It's so beautiful. That's amazing. It's so beautiful. Thanks. The biggest hopes and dreams for Lily would be that she can dance. Spin around! Spin around! Spin around. She just wants to be on the stage where people can see her. She's so confident about who she is. Floating arms, like in Swan Lake. It may take her a bit longer. And it may not completely like being a ballerina. She might be the first double-amputee ballerina. TRANQUIL MUSIC We talk about her needing to be in her legs, but at the end of the` of whatever day she wants it to be, if she doesn't want to be in her legs, that's her call. Cos she's only gonna do what's good for her. Cos what I think is good for her and what ends up being good for her are two completely different things. She will choose what's best for her. And if it's her wheels, then wheels it is, you know. She will make that work. She will always find a way to make that work. TRANQUIL MUSIC ATTITUDE THEME Captions by Jessica Boell. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014